Wednesday, July 16, 2014


Random thoughts....

If motherhood came with an instruction manual we'd all have a perfuct life. Why couldn't it come with a warning label...You know, like on a bottle of Tylenol...Don't take if you have xyz...?? If there was a way we could see ahead of time what to expect maybe we'd have all the answers when life  takes a harsh turn. It's amazing what I've learned since having my kid. I feel like this is  the most I've learned in my entire lifetime..Even during undergrad...And my days in undergrad were intense. I crammed for 2 1/2 years, running both general ed classes concurrent with the paralegal courses. The curriculum was nothing like anything else I've experienced. It's safe to say motherhood trumps it all.  I know things now that I didn't know a year ago. Each day I seemed to learn more, the challenges got more intense as time persisted. I've learned to speak in medical terminology, understanding procedures, operate a feeding pump, trilogy ventilator, pulse oximeter etc. My place looks like a small hospital ward!! Overall, although I've learned a lot I still have a lot to learn..;)

Monday, July 7, 2014

The Right to Choose is Mine

Under ordinary circumstance the question of my decision to keep or abort wouldn't have been an issue. However, my physical limitations trumped it all. I was sent to an OB/GYN for high risk pregnancies. At my first appointment, I was asked if I wanted to keep it. Even at my genetics counseling I was asked the same thing. If I wasn't a realist I probably would have been offended or upset but given my unique situation, it was understandable. An amniocentesis was suggested to determine if the fetus had OI or not. It's minimally invasive procedure would puncture the amnotic sack & draw fluid to determine gene status. It's risks of miscarriage were slim but possible. I opted out due to the potential of having a miscarriage & decided that if the child had OI, it wouldn't change my decision to keep her. By my 20th week, they noticed shortened femurs ...A sure sign of OI. I wasn't in denial, just trying to optimistic.

I'd made up my mind a long time ago that children wasn't an option for me. I couldn't live with myself if the kid had OI. Although I wanted it so badly, it would have been selfish of me to bring a child into the world purposely, knowing that it may have OI. Little did I know, I would be faced with this decision years later. It's different once you're in the thick-of-it rather than looking into the future.  Now, they have what is called gene selection. Where the mother's eggs can be extracted & only the "good genes" are selected & implanted. That is THE ONLY way I will ever have another kid. Some people disagree with this option..Calling it selfish, self-absorbed & insecure of a person. Saying that people that choose gene selection is a sense of self hate. It's NONE of those things. It's giving the child the opportunity to live a healthy, pain free life. In spite of my decision to keep, I wouldn't trade it for anything in the universe.

Once, I saw a program called "I"m Pregnant And...Married to a Dwarf"....The couple (guy a dwarf; woman average) was expecting their first child & would find out after birth if the child was a dwarf just as the father. He had achondroplasia, a form of dwarfism & actually said he was hoping the child was too so they'd have something to relate to, that he wanted them to share a common ground. Sure enough, he did. In the delivery room, docs told them the child showed signs; webbed fingers. He was ecstatic as if he was the 200th customer at Costco & received all his items for free!!!! My thought was disbelief. Now I understand that disability pride is very important to the disabled community but it's quite another when you wish a lifetime of uncertainty on a child for your own selfish reasons. If relating to my kid is that important to me, we could wear matching outfits & take up pottery classes!!!! I was infuriated...Screamed at the tv actually...I prayed each day that my child was healthy & free of OI. But statistics  & DNA had other plans. I wanted my child to experience life pain free...No fractures once a month for no apparent reason..No corrective rodding surgeries..Hospital stays for a long stretch... OI & achondroplasia are two different disorders yet have some similarities in terms of skeletal deformations & a series of corrective procedures..Not to mention the emotional strains it takes on self esteem, body image & self-awareness. For a long time, I thought my prayers went unanswered because I wasn't the esteemed woman of God that I should have been. Kinda thought He was punishing me for my sins. But I know now that God doesn't punish anyone. Her disorder isn't a curse, but instead it's a blessing. I didn't want her to have OI but although she does, I accept her for the magnificent creature that she is. People have the right to feel whatever they want. I just think if those feelings have the potential to infringe on the wellbeing of others one should rethink their priorities.